United 2 End MND working with the leading charities & researchers

Remembering fellow campaigner and our friend Chris Johnson

We are all heartbroken by the news of the passing of Chris Johnson. Although we all know how MND ends, it never gets any easier to bear. 

Chris was a core member of our United2EndMND campaign team. It was his work with Sajid Javid, the then Health Secretary, that got us a real foothold in Government. He came to meet Chris in Westminster in September 2021 and finally we had a senior Government minister who ‘got it’ – not only the case we were making but the sense of urgency. 

Chris was really the best of men, his kindness and decency was obvious from the minute you met him. He wanted to help defeat MND and he certainly did that. He will be a great loss to his family, of course, but also society as a whole has lost one of the ‘really good guys’. 

We will all miss our discussions with him on campaigning and the laughs we would have together. His absence will be felt keenly but will renew our determination to fight for a different future for those diagnosed with MND. 

Our thoughts are with his amazing wife, Sharon, who has also been such a great campaigner and fundraiser, and with his children.

Your friends Lee, Dave, Nicola and Emma.

Recent News Items

Institute up and running!

Our Institute is up and running! The first Board meeting of the new UK MND Research Institute took place last month (March 2023) and reported on progress. The scientists, who are…

Keep reading


Something went wrong. Please refresh the page and/or try again.

It’s great to see the coming together of people living with MND to do all we can to beat this brutal disease. I’m grateful to all my fellow warriors for their relentless efforts to make a difference. Together, we are united to end MND.

Doddie Weir OBE (1970 – 2022)

Have questions?

What is Motor Neurone Disease (MND) ?

Our Open Letter to UK Government 2021

Our visit to Parliament Sept 21st 2021